Crohn’s Disease: What’s It Really Like?

Crohn’s disease is a form of inflammatory bowel disease, and most people don’t know much about it. Before I was diagnosed with Crohn’s disease about 10 years ago, I had never really heard of it. Most people don’t know much about Crohn’s unless they or a loved one has it, but you could be genetically at risk of developing Crohn’s disease without knowing it.

These days, the understanding medical professionals have of Crohn’s disease is improving. Awareness about the disease is also increasing as of recently.

Researchers currently estimate over half a million people in the US alone have Crohn’s disease. Unfortunately, diagnosing the condition accurately is often a complex process, as Crohn’s is frequently confused with ulcerative colitis and other kinds of irritable bowel syndromes.

One realisation I’ve noticed during my time struggling with Crohn’s disease is everyone seems to experience the illness in their own way. Today, I’ll be giving you an insider’s look at what my life is like with Crohn’s disease, and how this disease can impact your life.

What is Crohn’s Disease?

Starting with the basics, Crohn’s is a form of inflammatory bowel disease. The condition occurs when your immune system causes chronic inflammation throughout the digestive tract. Some studies say that Crohn’s is most likely to occur between the ages of 20 and 30. Others say your likelihood of developing Chron’s increases between the age range of 15 to 35 years of age.

In the US, interestingly, Crohn’s disease is more common in women, while ulcerative colitis is more common in males. However, anyone can get Crohn’s disease at any time. Additionally, children are twice as likely to be diagnosed with Crohn’s as ulcerative colitis.

What Causes Crohn’s Disease and is it Hereditary?

Scientists aren’t completely sure what causes Crohn’s disease yet. Some say cigarette smoking is a cause (which wasn’t an issue for me, as I did not smoke). Active smokers are apparently twice as likely to develop this disease. Family history and genetic factors can also be a common risk factor, as immune issues are often passed down through genetics.

Around 20% of people with IBD (Inflammatory Bowel Disease) have another family member with an IBD condition as well (such as Crohn’s). If I had known this information 15 years ago, I might have invested in a DNA test just to save me some of the time doctors spent trying to figure out what was wrong. My DNA test would have flagged me for Crohn’s disease risk, and that information would have saved me some time figuring out what was wrong with me.

A malfunctioning immune system could cause Crohn’s disease. It’s possible that a virus or bacterium could trigger Crohn’s disease. Abnormal immune responses could cause one’s immune system to attack cells in their digestive system.

Stress and diet can worsen your condition, but doctors don’t think these issues cause the disease. Rather, it seems likely that Crohn’s is caused by a variety of factors, including genetics.

Crohn’s Disease Symptoms: What Does it Feel Like?

The kind of symptoms you have is usually influenced by the type of Crohn’s you have. The most common form of Crohn’s (my diagnosis) is ileocolitis, affecting the small intestine (ileum). This version of Crohn’s disease usually causes pain in the lower part of the abdomen. It can also cause diarrhoea and weight loss, though personally, those issues aren’t common for me.

Other more common symptoms of Chron’s that I’ve experienced include:

• Fatigue

• Intermittent fever

• Extreme cramping

• Blood in the stool

• Night sweats

• Reduced appetite

• Constipation

Many women will also experience interruptions in their menstrual cycle as another symptom of Crohn’s. If your disease manifests in the small intestine (duodenum), you might encounter symptoms such as vomiting and nausea. Another type of Crohn’s called Jejunoiletis (affecting the jejunum which is the middle part of the small intestine) may cause severe cramping after eating. Other symptoms that are not an issue for me but significant for some people depending on their Crohn’s disease include:

• Joint, skin, and eye inflammation

• Delayed growth (in children)

• Iron deficiency

• Inflammation of the bile ducts or liver

• Kidney stones

Interestingly, you don’t necessarily have these pains or severe problems all the time. It’s common to have remissions with Crohn’s, to the point where you almost forget you have a diagnosed illness. However, something simple like an anxiety attack, a stressful experience, or just a bad experience with food can bring the symptoms of Crohn’s rushing back.

How I’d Describe Life with Crohn’s

There are five different types of Crohn’s disease, so I wouldn’t consider myself an expert on all aspects of this disease. It’s also worth noting that my condition (so far) has been very mild. I’ve never had to have any surgery due to my Crohn’s disease. However, I’ve had friends with the same condition who have been much worse off than myself.

Most of the time, I try to forget the disease is even an issue in my life. I think of it as an inconvenience rather than something that defines my identity. However, It does make life a little more complicated and unpredictable at times.

It’s difficult to book vacations and enjoy travel because you never know when you’re going to be struck with pains so bad you can barely move. You never know when symptoms of Crohn’s disease will reappear.

Sometimes, however, dealing with the disease feels simple. You just follow a specific diet and avoid anything that might trigger symptoms. Other times, the experience of having Crohn’s disease is overwhelming, defined by heavy pain medication and feelings of physical, mental, and emotional exhaustion.

Luckily, I have a couple of people in my life who understand what I am going through. I have a few friends with long-term ailments and conditions that influence their lives as well, and we support each other. However, I also know people who don’t always understand what it’s like to be fine one day, then in too much pain to cope the next day.

When Crohn’s symptoms hit, it’s not the same mild discomfort as having irritable bowel syndrome or a touch of constipation.

I’ve had days where because of Crohn’s, I’ve lost all the feelings in my arms and legs and had to lay down on the floor of the bathroom to avoid passing out.

Plus, I’m constantly aware that stress and difficult life experiences can make the condition even worse and stress can manifest some of the worst symptoms. This makes me more nervous about even just the concept of getting stressed.

Does Crohn’s Disease Change Your Life?

Any kind of chronic illness, mild or severe, is going to change your life. My condition makes me more nervous, cautious, and aware of my own boundaries. Friends I’ve known with the disease have experienced more significant life changes, because they’ve dealt with Crohn’s that was less mild than mine.

There’s no single answer to how significantly Crohn’s will affect your life if you end up with a diagnosis. Some people, with medication and guidance, can have very mild, infrequent symptoms. Others need to take significant periods away from work when they’re experiencing a flare-up or choose different careers in order to accommodate their illness.

I know someone who had to transition from a fast-paced, active lifestyle in a security job to a far more sedentary desk job after his symptoms made it impossible for him to continue performing his job. This individual eventually ended up having a colectomy – a surgery that many people with Crohn’s may need at some point.

A colectomy involves having the colon removed and an opening made in the front of the abdominal wall through a stoma. You end up wearing a small bag where waste is collected throughout the day. (Yes, you often walk around with a noticeable odour.) Though this might sound horrifying, and this definitely negatively impacts many people’s lives, some people get through it better than others. I know for a fact my friend got used to it pretty quickly, and he now lives an active life as a father with minimal symptoms.

Sometimes, if a surgeon can remove the diseased part of the intestine and connect everything again, you may not need a stoma. Surgery in some form is common for most people with Crohn’s. Even if you don’t need a colectomy, there’s a good chance you’ll end up using surgery to address perforation, abscesses, bleeding, and blockages.

Dealing with Crohn’s: Finding Your Own Path

The most important thing you can do if you think you have a bowel illness is to see a doctor. Any blood in your stool, pain going to the bathroom or constipation can be a sign of something greater. I know how embarrassing it is to talk about but trust me when I say the quicker you catch the problem, the better off you’ll be.

It’s definitely worth speaking to a doctor if a DNA test and some digging reveals you have a family history of the disease. Crohn’s can also be more common if you’re of Eastern European descent, taking anti-inflammatory medications (like ibuprofen) regularly, or smoking cigarettes.

Speaking to a doctor should give you some insights into the kind of treatment options you can consider, including medications, surgeries, and natural treatment options. Because my symptoms are mild, I use a lot of natural remedies to manage my symptoms, such as:

• Plenty of sleep: Getting the right amount of rest each night helps to manage any chronic illness or disease. I find it easier to sleep on my side than on my back or stomach when dealing with flare-ups, but different people will have specific position preferences.

• Dietary management: During flare-ups, it’s essential to know what kind of food to avoid. I stay away from dairy, sugar, and spicy foods during difficult times. Some doctors recommend staying away from fibre, but this is only necessary if your symptoms include diarrhoea. If you struggle with constipation, fibre can help. Drink a lot of water, as often as you can, and consider supplements to get more probiotics and prebiotics into your diet.

• Lifestyle changes: The most common lifestyle change recommended by doctors is to quit smoking. If, like me, you don’t smoke anyway, try to avoid anything that might worsen your condition, such as alcohol and high amounts of caffeine. It’s also useful to find ways of managing your stress, as Crohn’s flare-ups are common in periods of anxiety. Yoga is helpful, as well as meditation, mindfulness, and even therapy in some cases.

For most people, the key to success is finding your own way to cope based on your symptoms and personal experiences. Follow your doctor’s recommendations but keep track of your experiences to guide your lifestyle changes. If you’re concerned you have an IBD issue but don’t know what it might be, a DNA test from CircleDNA could help you figure it out. CircleDNA tells you if you have a genetically higher risk of developing certain diseases, and this information helps people figure out what condition they might be suffering from.